If you havent already you need to try a course of RESTASIS

[Guest]

We as patients need to move away from artificial tears and Cyclosporine as they have been superseded.

No-one is disputing the fact that we need better treatments. But for now, we have no choice but to use what is available in order to allow our eyes to function better. If you can function without using artificial tears and/or Restasis, that's wonderful - not everyone is so lucky though - don't forget that.

There is no use getting excited about Restasis because it is scientifically inferior, widely accepted by ophthalmologists as imperfect

Why shouldn't a person be excited about Restasis IF IT HELPS THEM? Who wouldn't be excited about that?

If it makes one more functional, and less disabled by this condition, why the heck wouldn't one be excited about it.

But keep in mind that being excited about getting results from it and wanting a better treatment aren't mutually exclusive.

Furthermore, no-one has said that Restasis helps everyone, or that Restasis is good enough so there is no need to find even better treatment options. One can be happy about whatever positive effects they've had from Restasis, yet still hope for something even better in future.

...those who use Restasis are wasting their money

If someone says that Restasis has helped them, and there is no better treatment currently available to them, you are overstepping by saying they are wasting their money by using it.

I can only assume that you have never experienced dry eye symptoms that are as severe as what I, and others here, have gone through. If you had, I don't think you would be so quick to insist that we are wasting our money on a treatment that, while imperfect, is helping to alleviate some of our symptoms.

[littlemermaid]

I can only assume that you have never experienced dry eye symptoms that are as severe as what I, and others here, have gone through.

Well said, SAAG. Dryeyedave is a Stevens Johnson Syndrome sufferer recovering from blindness with amniotic membrane graft and immunomodulators http://www.dryeyezone.com/talk/showt...ght=#post84831. It is very kind of him to share his experience with specialist-managed protocol to help other people around the world and give them hope.

Sorry guys, but this is starting to sound odd.

we do need better and more effective treatments, better research and less of these false claims of cure-alls from marketers who sell to our vulnerabilities.

The solution to this problem is already ready and waiting in a laboratory.

I'm currently self funding research to cure dry eye for everybody in the world. Hope you & many others will benefit from this one day.

This is starting to sound a bit weird too on somebody else's kindly self-funded moderated patient experience forum.

We are here to assist members and carve new pathways for significant better treatment or a near cure for dry eyes and MGD

'• Tact and humility are greatly valued here. Avoid presenting your opinions as indisputable facts or your personal experiences as broad-brush truths.' http://www.dryeyezone.com/talk/showt...for-all-users)

Back on thread again, we have various formulations of Cyclosporine easily available in UK if wanted long-term as a 'steroid-sparing agent' but we are using short tapered courses of PF steroid eyedrops for inflammation flareups despite long-term cataract risk. What I'm really looking for is paediatric experience with cyclosporine for 'rosacea' chronic inflammation because we are at the guineapig stage using my child. This is why I am grateful for Dryeyedave's detailed experience of using both together and tapering off Lotemax onto Restasis. Thanks SAAG and Dryeyedave on buffering and rinsing to avoid burning. What a joy and relief to get wise and useful personal experience posts.

[NotADryEye]

Sorry guys, but this is starting to sound odd.

"we do need better and more effective treatments, better research and less of these false claims of cure-alls from marketers who sell to our vulnerabilities".

littlemermaid,

I see you do not live in the US and so perhaps you are not subjected to the constant barage or Restasis advertising that we have on television here. The advertising features an ophthalmologist who states that she uses Restasis, explains that it reduces inflamation which is the cause of dry eye and that the most common side effect is mild stinging.

If you were me, having suffered extreme pain from Restasis and not a little mild stinging, knowing that inflamtion inside my eyes does not cause my dry eye, having discussed the drops with some ophthalmologists who will no longer prescribe Restasis because it alters the tear protiens that are secreted and that even my own primary care physician will not use it because she knows it is not as safe and effective as it is touted to be, then perhaps you might understand why I believe that the way Restasis is marketed in the US is a travesty.

We dry eye patiens all need access to better and more effective treatments, treatments that are widely available to each of us all around the world.

[littlemermaid]

Thanks NotADryEye, it's kind of you to explain ~ You're right, we don't have Restasis advertising like that yet so it just seems like another prescription med option to me. I hate feeling like a mug for trusting professionals. Sounds like advertising has again turned a decent medical product into a harmful con. It's difficult thinking about side effects and whether they will rectify in healing. I wonder what wise docs would use on themselves and their loved ones - maybe it's the minimum to do a good job. I'm not thrilled about using steroids 5y either but the cornea would have broken down. I dearly hope you can find relief soon. It would be good to hear more about your Hashimoto's management in a thyroid thread. It's good that Dryeyedave is healing well on his regime and SAAG is helped with cyclosporine.

[NotADryEye]

littlemermaid, you have hit the nail on the head. Thank you for understanding.

[Rebecca Petris]

[Playground monitor comments]

Anyone found bashing people over the head with their good intentions and superior information needs to go re-read the FORUM POLICY. Re-reading the part about etiquette several times could be distinctly helpful.

When sharing opinions and 'information', confidence in one's good intentions isn't enough to make one's participation helpful (or desirable). A dash of humility, a generous share of good judgment, several shakes of kindness, a smidgen of common sense and oh even some traces of willingness to listen carefully help a lot in shaping the character of the forum. Many thanks to those who routinely indulge in such recipes.

[/end lecture]

[Faith1989]

I feel that Restasis is somewhat effective for me. I recently went off of it, and I really thought my eyes would be less red because I thought restasis was causing it, but I was wrong. Once I stopped, my eyes became more inflammed and red. I went off it and did a two week course of lotemax. I was feeling really good, but once i weaned off the lotemax, i felt the inflammation coming back. I was trying not to put prescription drops in and just use pataday and my serum drops but it seems that my inflammation is to strong for that.. and i do need the drugs. -annoying.

[patientpatrick]

I have noticed that after 2 months of restasis my vision got clearer. So I'm guessing that affected my tear quality, but I'm not sure about quantity as allergen suggests. It's funny because I'm now 10 months into using restasis and I'm quadra plugged and my schrimer scores have decreased. not sure why.

[DCRdryeye]

Patrick, are your plugs 'totally' blocking tear flow? sometimes the puncta can be a different shape and the plugs can be not sitting properly, allowing a small amount of tears through. Do you also have MGD, perhaps the tears are evaporating before it gets to pool from the plugging? But I can understand it's disheartening to know you've been quadra plugged and have a reduced schimers...you'd expect it to be the other way around.

I have read that Restasis can increase tear quality, but the claims about "quantity" haven't lived up to the companies advertisements.

[MartyM1985]

I am still waiting to write my TRIUMPH (probably next month), but I have to sound off here against the Restasis naysayers.

I was in the dark in January... barely any Schirmer-test output, using drops every 5-10 minutes. Some of you might remember my posts back in the spring. I was essentially disabled.

I am seven months into Restasis with upper and lower plugs. I'm back to work. I am on the computer for 8-10 hours a day. I'm dating again. I'm still somewhat sensitive to light, but I'm living my life and still making progress on the healing-tip.

If you haven't tried Restasis for six months or more, you owe it to yourself to give it a shot.

[patientpatrick]

Are my plugs blocking 100% probably not, but I do believe its blocking a good majority. I dropped my artificial tears usage by about 80% so,that's a good sign. Also, if I do put in a tear it never drains completely. In fact sometimes I will put in a serum drop and close my eyes for a whole hour while listening to the news. I eventually let the drop flow out.

In regards to mgd, yes I have that. But what's strange is that it should be irrelevant to my schrimer scores. Especially since the test is conducted with my eyes closed for 5 min.

I guess all in all, I'm wondering why the scores would be lower instead of higher with plugs and restasis usage.

[patientpatrick]

Patrick, are your plugs 'totally' blocking tear flow? sometimes the puncta can be a different shape and the plugs can be not sitting properly, allowing a small amount of tears through. Do you also have MGD, perhaps the tears are evaporating before it gets to pool from the plugging? But I can understand it's disheartening to know you've been quadra plugged and have a reduced schimers...you'd expect it to be the other way around.

I have read that Restasis can increase tear quality, but the claims about "quantity" haven't lived up to the companies advertisements.

Are my plugs blocking 100% probably not, but I do believe its blocking a good majority. I dropped my artificial tears usage by about 80% so,that's a good sign. Also, if I do put in a tear it never drains completely. In fact sometimes I will put in a serum drop and close my eyes for a whole hour while listening to the news. I eventually let the drop flow out.

In regards to mgd, yes I have that. But what's strange is that it should be irrelevant to my schrimer scores. Especially since the test is conducted with my eyes closed for 5 min.

I guess all in all, I'm wondering why the scores would be lower instead of higher with plugs and restasis usage.

[DCRdryeye]

Your score could be lower through a negative feedback mechanism. If you are using 80% less drops then your ocular surface is wetter than normal and the nerves monitor the moisture sending signals back to the Lacrimal glands saying, "There's moisture, decrease production of tears!". Or the nerves sending signals to the Lacrimal glands may be overly sensitive or somehow the not communicating prooperly. I'm don't know if you had LASIK induced dry eye, but nerve damage can create this negative feedback mechanism.

[patientpatrick]

I has lasik 21 months ago. I don't know how to restore this feed back loop.

[Dog2012]

Agree ...the serum drops that what really works !

Forget RESTASIS, it's not as good as the claims make out. Many people on this forum have been disappointed from the lack of results from it and to get a better perspective of why Restasis is possibly preventing better treatments, go to my new blog I've just written called "EXPOSING THE MYTH OF RESTASIS" at http://australiandryeye.webs.com/app...th-of-restasis